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Author Topic: Post treatment side effects (Epclusa + others)  (Read 5319 times)

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Offline 1bit

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  • Posts: 28
Post treatment side effects (Epclusa + others)
« on: September 11, 2019, 12:51:15 pm »
I have a friend who completed a course of Epclusa and says ever since he's done it his Arthritis is much more painful and suffers a great deal of fatigue and this is 5 months after it...

...has anyone else suffered from strange post-treatment side-effects that either went away eventually or are still around? if so what are they?

thanks
Genotype 1a Infected 1999
- responder/relapser Inf+Rib 2008
- discont. Abbvie 3D (sides) 2016
- commencing Zepatier 2019
Biopsy 2006 = 2/6 ISHAK (Grade 7 / Stage 2)
Fibroscan 2010: 8.9 : (ALT 55)
Fibroscan 2016: 7.9 : (ALT 50)
Viral Load = 9.6 million

Offline Nina Mae

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  • Posts: 71
Re: Post treatment side effects (Epclusa + others)
« Reply #1 on: October 06, 2019, 02:00:56 am »
Hi,

I also finished a course of epclusa (but with ribavirin) on May 23rd.  I, too, notice arthritic type pain in my knees and upper arms.  I'm tired too...a lot.

I've developed a skin rash (itchy as heck) below my rib cage and that's really recent so I don't know if it would be a delayed side effect from Epclusa.

How's he doing?  Sending good vibes...

Dx'ed HVC and cirrhosis Nov, 2018
GT: 1a; TN; F4-44
Started Epclusa and Ribavirin on Mar 2019
May 23:  EOT HCV RNA:  Undetected
Aug 15:  SVR 12:  Undetected
Nov 19:  SVR 24:  UNDETECTED!!!

Hep C Free!!!!

Offline Becca333

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  • Posts: 28
Re: Post treatment side effects (Epclusa + others)
« Reply #2 on: October 13, 2019, 05:49:13 pm »
I just finished Epclusa in August and I also have a itchy rash except it is on my chin and around my mouth. Just beautiful right? It acts like it is healing but comes right back. I just took my first post hep c blood test. Fingers crossed I am still showing undetected.

Offline Nina Mae

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  • Posts: 71
Re: Post treatment side effects (Epclusa + others)
« Reply #3 on: October 13, 2019, 07:25:19 pm »
That's exactly right!  My rash appears and feels like it's going (or even gone) during the daytime.

At night, it comes back and crazy itchy.  I do have a tendency for delayed and weird things like this to happen to me so I wouldn't be surprised if it could be a delayed side effect...especially since you, too, have developed a skin rash months after treatment.

Other than that, I'm doing okay...hope you are too!

Nina
Dx'ed HVC and cirrhosis Nov, 2018
GT: 1a; TN; F4-44
Started Epclusa and Ribavirin on Mar 2019
May 23:  EOT HCV RNA:  Undetected
Aug 15:  SVR 12:  Undetected
Nov 19:  SVR 24:  UNDETECTED!!!

Hep C Free!!!!

Offline Becca333

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  • Posts: 28
Re: Post treatment side effects (Epclusa + others)
« Reply #4 on: October 19, 2019, 02:39:07 pm »
It literally looks like I have psoriasis on my face. I just got my first post treatment blood test results. Undetected!! I guess it's worth looking like I have a skin disease on my face. As long as the hep c is gone.

Offline Lynn K

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  • Get tested, get treated, get cured, fight Hep c!
Re: Post treatment side effects (Epclusa + others)
« Reply #5 on: October 19, 2019, 09:09:32 pm »
Have you asked your doctor about this rash? A rash is on the list of known side effects with about a 1 to 2% occurrence in clinical trials but is resolved post treatment. You may want to report this to the number on the prescribing information sheet that you should have received with your prescription so the FDA and manufacture are aware of this possible side.

Here is a link to the prescribing information sheet for epclusa

https://www.gilead.com/-/media/files/pdfs/medicines/liver-disease/epclusa/epclusa_pi.pdf

“ To report SUSPECTED ADVERSE REACTIONS, contact Gilead Sciences, Inc. at 1-800-GILEAD-5 or FDA at 1-800-FDA-1088 or www.fda.gov/medwatch.”
« Last Edit: October 19, 2019, 11:39:32 pm by Lynn K »
Genotype 1a
1978 contracted, 1990 Dx
1995 Intron A failed
2001 Interferon Riba null response
2003 Pegintron Riba trial med null response
2008 F4 Cirrhosis Bx
2014 12 week Sov/Oly relapse
10/14 fibroscan 27 PLT 96
2014 24 weeks Harvoni 15 weeks Riba
5/4/15 EOT not detected, ALT 21, AST 20
4 week post not detected, ALT 26, AST 28
12 week post NOT DETECTED (07/27/15)
ALT 29, AST 27 PLT 92
24 week post NOT DETECTED! (10/19/15)
44 weeks (3/11/16)  fibroscan 33, PLT 111, HCV NOT DETECTED!
I AM FREE!

Offline Nina Mae

  • Member
  • Posts: 71
Re: Post treatment side effects (Epclusa + others)
« Reply #6 on: November 19, 2019, 08:33:29 pm »
My rash 'outbreaks' are due to dry skin, I have to think.  When I started moisturizing like crazy and using hydrocortisone cream, they've gone away.

I just found out today that my SVR 24 is undetected!  Epclusa/Riba cured me of Hep C!    :D :D :D

My platelets are slowly dropping (127, and that's not too bad) but my bilirubin, etc are all w/i reference range except my INR (1.3), AST (37), ALP (222, off the charts).

MY Child Pugh score is now 6; my MELD score is now 9.

I am so grateful for so many things...this forum has proven to provide a great source of support and information.  I can't thank everyone enough who have chimed in on my posts.

I had my 6 mo ultrasound and a gallbladder polyp showed up.  My Hep C nurse said they'll be alternating abdominal ultrasounds with Triphasic CT Scans just to keep everything in check.  Wondering if anyone else is familiar with this.?

All my best hopes and wishes for all of us who are dealing with HCV and/or any liver disease.

Always, always grateful...
Dx'ed HVC and cirrhosis Nov, 2018
GT: 1a; TN; F4-44
Started Epclusa and Ribavirin on Mar 2019
May 23:  EOT HCV RNA:  Undetected
Aug 15:  SVR 12:  Undetected
Nov 19:  SVR 24:  UNDETECTED!!!

Hep C Free!!!!

Offline Mugwump

  • Member
  • Posts: 775
  • My number of posts means nothing, piscor ergo sum!
Re: Post treatment side effects (Epclusa + others)
« Reply #7 on: November 20, 2019, 10:07:14 am »
Fantastic Nina!!


It is really hard to get the focus away from all the crap that goes on when you have slightly more liver damage and other issues pop up separate from HCV infection. It is very easy to forget that having compromised liver functions can create all sorts of issues. And we do not know how well the liver can heal at different levels of damage.


Getting things on an even keel is not easy for some of us. Many of us with advanced liver damage have experienced more crap than can be explained by "side effects" to a DAA. Here is hoping that the medical science community sees some value in studying how removing HCV from the equation and having the liver rebuild effects us poor humans. Fortunately there are some long term studies going on.


Keep your stick on the ice Nina, SVR 24 is time to celebrate IMO because chances are that removing HCV from the equation has added to our quality of life big time as we age.
Caution shameless self promotion below :-)
https://www.hepmag.com/article/eric-reesor-27742-782589663
DING DONG MY DRAGON (HCV) IS FINALLY DEAD!

Offline Nina Mae

  • Member
  • Posts: 71
Re: Post treatment side effects (Epclusa + others)
« Reply #8 on: November 21, 2019, 02:16:10 am »
Thank you, Mugwump, for your kind words.

You're spot on about the potential complications that arise from liver disease.  Mugwump, I was so sick before but now and even during tx, I've been feeling increasingly better. 

Every day is a challenge, I suppose for many of us.  I am one of them but like you say, I'm trying my darndest to stay cautiously optimistic.  There will always be 'good days' and 'not-so-good days'.

Hey, it is what it is, they say.  But I'm really getting 'okay' with it all.  I've accepted my illness but I'll continue fighting it with all I have.  I figure we're here on borrowed time anyway...so make it the best we can.
Dx'ed HVC and cirrhosis Nov, 2018
GT: 1a; TN; F4-44
Started Epclusa and Ribavirin on Mar 2019
May 23:  EOT HCV RNA:  Undetected
Aug 15:  SVR 12:  Undetected
Nov 19:  SVR 24:  UNDETECTED!!!

Hep C Free!!!!

Offline Lynn K

  • Global Moderator
  • Member
  • Posts: 4,493
  • Get tested, get treated, get cured, fight Hep c!
Re: Post treatment side effects (Epclusa + others)
« Reply #9 on: November 22, 2019, 01:31:21 am »
Wow Nina congrats on you SVR 24 that is awesome. We all shall soldier on ;)
Genotype 1a
1978 contracted, 1990 Dx
1995 Intron A failed
2001 Interferon Riba null response
2003 Pegintron Riba trial med null response
2008 F4 Cirrhosis Bx
2014 12 week Sov/Oly relapse
10/14 fibroscan 27 PLT 96
2014 24 weeks Harvoni 15 weeks Riba
5/4/15 EOT not detected, ALT 21, AST 20
4 week post not detected, ALT 26, AST 28
12 week post NOT DETECTED (07/27/15)
ALT 29, AST 27 PLT 92
24 week post NOT DETECTED! (10/19/15)
44 weeks (3/11/16)  fibroscan 33, PLT 111, HCV NOT DETECTED!
I AM FREE!

Offline Nina Mae

  • Member
  • Posts: 71
Re: Post treatment side effects (Epclusa + others)
« Reply #10 on: November 22, 2019, 01:45:39 am »
You got that straight!

Hope you're doing good?   8)
Dx'ed HVC and cirrhosis Nov, 2018
GT: 1a; TN; F4-44
Started Epclusa and Ribavirin on Mar 2019
May 23:  EOT HCV RNA:  Undetected
Aug 15:  SVR 12:  Undetected
Nov 19:  SVR 24:  UNDETECTED!!!

Hep C Free!!!!

Offline Lynn K

  • Global Moderator
  • Member
  • Posts: 4,493
  • Get tested, get treated, get cured, fight Hep c!
Re: Post treatment side effects (Epclusa + others)
« Reply #11 on: November 22, 2019, 02:17:47 am »
Doing fine boringly normal at least by outward appearances. Just a low platelet count and a course echotexture liver nothing to see here lol
Genotype 1a
1978 contracted, 1990 Dx
1995 Intron A failed
2001 Interferon Riba null response
2003 Pegintron Riba trial med null response
2008 F4 Cirrhosis Bx
2014 12 week Sov/Oly relapse
10/14 fibroscan 27 PLT 96
2014 24 weeks Harvoni 15 weeks Riba
5/4/15 EOT not detected, ALT 21, AST 20
4 week post not detected, ALT 26, AST 28
12 week post NOT DETECTED (07/27/15)
ALT 29, AST 27 PLT 92
24 week post NOT DETECTED! (10/19/15)
44 weeks (3/11/16)  fibroscan 33, PLT 111, HCV NOT DETECTED!
I AM FREE!

Offline Nina Mae

  • Member
  • Posts: 71
Re: Post treatment side effects (Epclusa + others)
« Reply #12 on: November 22, 2019, 02:58:31 am »
I crave 'normalcy'.  It's been such a long 12 months and feeling more normal is a relief and I wouldn't mind one bit of boringness sans worry.

I know you can relate.  I'm looking forward for a few weeks where I don't have an appointment to see any dr's or have any tests, honestly.  Went to the darn dentist to find out I need a root canal on top of all the other BS.

I know it's no big deal but I wouldn't mind a break already from all healthcare....

Meh, no problem, right?  This will pass soon...
Dx'ed HVC and cirrhosis Nov, 2018
GT: 1a; TN; F4-44
Started Epclusa and Ribavirin on Mar 2019
May 23:  EOT HCV RNA:  Undetected
Aug 15:  SVR 12:  Undetected
Nov 19:  SVR 24:  UNDETECTED!!!

Hep C Free!!!!

Offline KimInTheForest

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  • Posts: 1,968
  • Believe in yourself
Re: Post treatment side effects (Epclusa + others)
« Reply #13 on: November 22, 2019, 06:33:34 pm »
Congratulations Nina and Becca on each of your recent "undetected" results!! Such a good feeling to see those words and know you are really done!
Kim Goldberg (Nanaimo, BC)
1970s: Contracted HCV (genotype 3a)
2015: Cured with Harvoni + ribavirin (12 weeks)
MY STORY: https://pigsquash.wordpress.com/2016/01/28/undetectable-my-hep-c-story/

Offline Nina Mae

  • Member
  • Posts: 71
Re: Post treatment side effects (Epclusa + others)
« Reply #14 on: November 22, 2019, 08:09:12 pm »
Thank you, KiminTheForest!

I'm so grateful for so many things.

Hope you're doing okay...
Dx'ed HVC and cirrhosis Nov, 2018
GT: 1a; TN; F4-44
Started Epclusa and Ribavirin on Mar 2019
May 23:  EOT HCV RNA:  Undetected
Aug 15:  SVR 12:  Undetected
Nov 19:  SVR 24:  UNDETECTED!!!

Hep C Free!!!!

Offline KimInTheForest

  • Member
  • Posts: 1,968
  • Believe in yourself
Re: Post treatment side effects (Epclusa + others)
« Reply #15 on: November 22, 2019, 08:11:43 pm »
I'm doing quite well right now, Nina. Thanks! It's been a rough road for me since getting cured in 2015. But am having some good health at last!
Kim Goldberg (Nanaimo, BC)
1970s: Contracted HCV (genotype 3a)
2015: Cured with Harvoni + ribavirin (12 weeks)
MY STORY: https://pigsquash.wordpress.com/2016/01/28/undetectable-my-hep-c-story/

Offline Nina Mae

  • Member
  • Posts: 71
Re: Post treatment side effects (Epclusa + others)
« Reply #16 on: November 22, 2019, 08:24:25 pm »
Right on, Kim!

I love hearing (reading) this! 

I celebrate with you for you!   :D
Dx'ed HVC and cirrhosis Nov, 2018
GT: 1a; TN; F4-44
Started Epclusa and Ribavirin on Mar 2019
May 23:  EOT HCV RNA:  Undetected
Aug 15:  SVR 12:  Undetected
Nov 19:  SVR 24:  UNDETECTED!!!

Hep C Free!!!!

 


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